Partnering with the Registry
The IBD Registry can provide a comprehensive infrastructure for research partners through its Web Tool, which is currently being used in over 60 sites. The Web Tool is a relatively low-cost and flexible system. It can be updated with research specific data fields directing clinicians to capture the information required.
Data captured as part of a research partnership will inform service standards, clinical guidelines, quality improvement and assurance programmes. The Registry Web Tool is currently facilitating two research projects:
Anaemia Service Evaluation (ASE): This project is a joint working initiative with Pharmacosmos, and aims to evaluate the level of service IBD patients receive and how they are treated. The study will gather data on 100 patients with IBD. Iron levels will then be monitored over 12 months to determine how well iron deficiency anaemia is managed in this cohort of patients.
The UK Vedolizumab Real Life Experience Study in Inflammatory Bowel Disease (VEST) aims to gather outcomes data on vedolizumab in a real-world clinical setting. Hospitals across the UK are currently participating and the study is open to new sites. Eligible patients have to be adults who are due to start vedolizumab in standard care. Data is obtained from the patient’s own reported outcomes, clinical assessments and the medical notes including disease characterisation, medications, previous history and blood test results.
Dr Keith Bodger describes how the IBD Registry can be used for Research
In 2016, an IBD Registry Industry Working Group was set up, to focus on practical ways in which industry can help to accelerate Registry uptake.
Working with the Registry executive, the group has published a prospectus for appropriate industry involvement, including transparent processes for collaborative data projects. They have agreed a fair funding framework for all companies engaged in IBD to support the Registry.
To help IBD clinical teams to collect local data, the group has established a grant fund to support additional hours for data entry.
The IWG launched it’s Field Support Programme in November 2017. Field-based personnel trained by the IBD Registry team will visit hospitals in a non-promotional capacity to offer advice and support. Any information collected during these meetings will be held by the Registry and not by the pharmaceutical companies. Sites will be notified by email by mid-November and can easily opt out if they wish to do so.
The Field Support Programme is just one example of industry support for the Registry, and you can read more about the Industry Working Group in this month’s edition of Pharma Times.
The current members of the Industry Working Group are Dr Falk Pharma, Janssen, Pharmacosmos, Takeda and Tillotts.
The Industry Working Group was featured in a recent edition of Pharma Times. To find out more go here.
The future of collaboration between industry and the NHS.
What has the Industry Working Group achieve?
What can we learn from the Industry Working Group?
For more information on collaborating with the Registry please contact: [email protected]
Funding for the IBD Registry has been provided by: the British Society of Gastroenterology, AbbVie, Allergan, Celltrion, Dr Falk, Janssen, MSD, Napp, Otsuka, Pfizer, Pharmacosmos, Shire, Takeda, Tillotts and Vifor as well as private donors. We would like to thank all of these organisations and individuals for their invaluable support.
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